When Jerry Koh’s wife, Anne, was diagnosed with breast cancer in the spring of 2008, he was slammed by a wave of feelings.
“It was, ‘Why is this happening to us? Why do we have to go through this?’ ” Koh told me.
Most men have the same thoughts, but unlike many, Koh, 36, had a good idea of exactly what was about to happen to his wife — and to him — because he’s a Seattle-area physician, an internist.
“In one respect, that was harder for me because I could see all the potential things that could happen like chemo and radiation,” he said. So he knew what the treatments could do to the couple’s relationship, including their intimate life.
He tried to shove those thoughts out of his head because he felt guilty for even thinking about his sex life. “I felt terrible about it,” he said. Instead, he turned to the tasks at hand: caring for his wife and his 2-year-old daughter and working long days at the hospital. That, in turn, made him feel helpless.
Dr. Susan Domchek of the University of Pennsylvania’s Abramson Cancer Center often sees this reaction. Domchek, who has made a specialty of treating younger women, believes men experience “a loss of control.”
“Your spouse is suffering, and there is nothing you can do about it,” she said. “You cannot fix it and make it better. That is a real problem for men.”
Avoiding sex talk
Helplessness, frustration, sexual anxiety, stress — men experience all of these, in some cases to a greater degree than their loved one who has been diagnosed with breast cancer. Yet there are precious few resources to help men cope. Even if there were more, experts wonder if men would take full advantage of them because many hide their doubts and anxieties, especially when it comes to changes in a couple’s sex life.
Bud Dougherty, 65, said following his wife's 2001 diagnosis, he wouldn't have felt comfortable sharing those concerns, even if he knew of any support services available.
“If I had any such feelings, they were fleeting, and I would not have felt it appropriate to talk about them,” said Dougherty, of San Mateo, Calif. “The issue was not my concerns, but supporting her as she went through whatever she needed to go through.”
'We'll talk about diarrhea, but not sex'
It would help if doctors anticipated such intimate relationship issues without a man or a couple needing to ask for assistance, experts said.
More from TODAY.com
See how these 4 people lost over 100 pounds each — and kept it off!
Here, we check in with four of our Joy Fit members from the past year as part of TODAY's "2014 Voices" series, to see how ...
- 7 anti-aging foods you should be eating today
- 7 big-batch cocktail recipes for holiday parties
- ‘90 Day Fiance’: TLC’s newest TV guilty pleasure
- President Obama calls Sony decision a ‘mistake’
- See how these 4 people lost over 100 pounds each — and kept it off!
“The medical profession does not pay enough attention to this, absolutely not,” said Mary K. Hughes, a clinical nurse specialist at Houston’s M.D. Anderson Cancer Center.
Hughes, who helps cancer patients address issues such as their sexuality and lectures widely on the subject, said, “We joke about sex, but to really talk about it, well, most professionals feel inadequate.” So when counseling cancer patients and their partners, “we’ll talk about diarrhea and nausea but not sex.”
One thing all experts agree upon is that breast cancer treatment, like prostate cancer treatment, should include the partners of the patients so the couple is treated as a unit.
“It is novel to have health care attention paid to you if you are not the patient,” said Chris Segrin, head of the University of Arizona’s department of communication, who has worked extensively with men and couples who have been touched by a breast cancer diagnosis. “It’s like the patient exists in a vacuum, but partners are as distressed psychologically as the person with the cancer; we find that repeatedly.”
While a few fledging programs are being created to help the partners of cancer patients, breast cancer has become laden with all kinds of political and social baggage that has little to do with medicine. It is often seen as a female cause. Some men, experts say, feel they are “not allowed” to worry about the burdens a diagnosis can create or changes in their own sex lives.
Beloved breasts become focus of worry
For most men, for example, breasts are eroticized. Suddenly, with a diagnosis of breast cancer, breasts become a medicalized problem viewed as a threat to the woman a man loves. Desire triggered by breasts can become worry triggered by breasts.
Video: How men can help women with breast cancer If therapy necessitates a mastectomy, such as in Anne Koh's case, how will a man’s view of his lover’s body change? After all, if men have learned to never admit that, yes, those pants DO make her butt look big, imagine how tight-lipped they are about any doubts surrounding their loved one’s attractiveness after cancer treatment.
“Look, saying, ‘I am not sure I find you as attractive as I once found you’ is difficult to admit publicly,” said Segrin. “One’s natural reaction is to be there for your partner, yet we know that some men have a tough time accepting their wives in the same way as before.”
Koh had those thoughts, fleetingly, but “I never voiced any of that,” he said.
The situation is made more complex because, regardless of the man’s reaction, a woman’s own body image and sexuality may be quite different after breast cancer than before. Many women are thrust into instant menopause because, depending on the cancer type, therapy aims to shut down the production of estrogen. These women may experience vaginal dryness, pain with intercourse, a less sensitive clitoris, and suffer a dramatic fall in libido. These changes can be especially traumatic for younger women.
Feelings of guilt
Sometimes men don't talk about these changes due to fear of appearing selfish, because they are just happy their wives are alive — or simply because they’re men.
“Men are not the greatest communicators,” Hughes said. “Women will sit and talk about it. Women in lesbian relationships talk about it and the impact on their relationship. Guys are not so willing.” This reluctance to air feelings can have a cost. If, say, a woman does experience vaginal dryness, her male partner may think he is to blame.
If a woman has had a mastectomy, even with a reconstruction, men often ignore both breasts out of fear of hurting their partner physically or drawing too much attention to breasts at all and hurting them emotionally.
“My patients say they have to tell the men to keep caressing [the natural breast] because that one still feels good,” Hughes explained.
Women often will not communicate either, though. Some of the women Hughes counsels refuse to tell their husbands they are simply not interested in sex, often because their sex life was good before and they miss it, or because their husbands have been stand-up guys throughout the cancer and the women feel an obligation.
The men, on the other hand, might also be feeling an obligation to prove they regard their wives as sexually appealing and so initiate sex they may not really want.
"Mastectomy and radiation don’t put anybody in the mood,” said Koh.
And, often, worry about their partner's health overshadows everything else.
“The most important thing to most men is that their wives are OK, that the cancer be gone, and the sex things they will sublimate,” Hughes said. “They just don’t want their wives to get cancer again.”
After Dougherty’s wife was diagnosed and treated, the couple’s intimate life did change. “We knew that sexual intimacy would be complicated," he said. "We both understood that.” He and his wife addressed such issues between themselves, he said and, despite the impact, their overall relationship became closer. He may have been somewhat more worried about sex, he said, if he’d been younger, but at his life stage, sex ranked farther down his list of relationship priorities.
Not all relationships survive the added pressures of cancer. But reports of widespread abandonment are largely mythical, most studies say. According to Penn’s Domchek, abandonment cannot always be blamed on male perfidy. A mastectomy, for example, is a loss for the couple, not just the man or the woman. Just as men find themselves standing on unexpectedly shifting ground, women also go through what Domchek calls “a huge process. They have lots of re-evaluation.” Sometimes the woman does the leaving.10 surprising sex statistics
“There is no denying that after breast cancer some people get divorced,” Segrin said. But his work with men and couples tells him that usually, it’s not really the breast cancer experience that causes a breakup. “Ordinarily a couple with a solid relationship before will have a solid relationship after,” he said.
The Kohs benefited from their own strong relationship. Supported by her husband, family and friends, Anne successfully completed her cancer treatment, and, Jerry said, “though I kind of thought of it as how it will change us as a couple, it did not really change us too much.”
Anne, who is waiting on breast reconstruction, said she's sometimes self-conscious about her appearance.
But, said Jerry, “I just let her know I don’t care, that it makes no difference to me. Really, honestly, that is true.”
Brian Alexander is the author of the book “America Unzipped: In Search of Sex and Satisfaction," now in paperback.
© 2013 msnbc.com. Reprints